Ditching topical steroids and documenting my journey through the withdrawal process that follows

My Current Methods of Comfort

Hi everyone,

I hope you like my “It’s Raining Skin” picture. If you don’t, well then that’s a problem, because it is definitely raining skin flakes over here. I am so flaky!! Better than oozing though I guess. Anyway, I’ve been wanting to do a post for a while now regarding what currently brings me comfort during topical steroid withdrawal (TSW). I’ve put off writing this for weeks because it seems that what “works” for me is always changing. However, I think the routine I’m at right now may stick for a while. We’ll see. Obviously take all of this with a grain of salt, because what works for one person may not work for the next. None of this is medical advice (nor is anything on this blog) but rather just my own current methods of getting through the day. If you’re in the ITSAN forums there is a wonderful blog post herethat Joey wrote titled “My personal methods of comfort”; it really helped me in the beginning to have a guide of sorts for reference. So here is my spin on that:

Ice packs and ice baths. Ice is the only thing that helps me calm down out of an itching fit- the bone deep, intense, drive-you-crazy type itch. I really only get those on my hands, wrists, neck, and jawline (so far). When my hands all over are itching intensely, I submerge them in a large bowl filled with ice and some cold water. I slosh them around in there to get the ice moving and take several deep breaths as the cooling sets in. I usually can only stand it for a few minutes, but that’s normally all I need. I really try to keep my hands out of contact with moisture, so if I don’t NEED an ice bath, I don’t use one. Typically I reach for an ice pack, wrap some tissue around it so I stay dry, and calm the itch with that. Essentially numbing the area is a life saver for me, but I really try to do it sparingly.

Cotton gloves (tight fitting). I really haven’t been needing these as of late, but a few weeks ago my hands were SO much more itchy that I swear it never stopped. Lots of ice baths back then. My hands would be so raw I could barely move them and it was painful for anything, even air, to come in to contact with them. That’s when the gloves would go on and I was so much more comfortable and able to do a few things (like hold a fork). The downside is that if you are oozing, the gloves will get wet and if you don’t change them out you will essentially adhere to the gloves and that is SO painful to rip off. Which just causes the area to ooze again anyway. Sometimes I would wrap my hands in tissue or gauze and then put on the gloves.

Moisturizer, or the lack thereof. I truly only use moisturizer on the areas I feel like I have to. Those areas are my hands and my mouth. I can not stand not being able to use my hands and watching them split open and bleed simply because I did something like, oh I don’t know, opened a drawer? Breathed? My hands just felt horrible any day I tried to go without moisturizer, and for me, it just wasn’t worth it. My mouth was a similar issue because many days I could not open my mouth to eat. I’m not going to lose weight because of this condition so icing and moisturizing my lips did the trick to “open the hinges” wide enough for me to eat. That being said, I try to only moisturize those two areas once a day (right after a shower). I use all natural raw shea butter, though I’ve tried coconut oil, vaseline, Egyptian Magic, and many other things… shea butter is the most comfortable for me. I don’t use any moisturizer elsewhere simply because I can’t find anything that is comfortable (for face, neck, back etc.) and I’m sick of trying, and honestly I think I am more comfortable without it and letting my skin learn to make it’s own moisture. There is some info on moisturizer withdrawal helping to speed up TSW recovery, so I might as well give it a go since everything is irritating in those areas anyway. I also gave up deodorant as well because my underarms are largely affected areas and everything I tried would sting. I don’t smell and I don’t even notice a difference without it, haha.

Witch hazel. This has been like my cure-all for everything. I have two kinds: the first one (#1) is the kind you can buy at any drugstore that has alcohol in it (usually 14%) and the rest witch hazel, and the second one (#2) is Thayer’s Alcohol Free Unscented Witch Hazel, which I found at Whole Foods. I use #1 for any areas that I want to “clean” because it has the alcohol in it to help kill bacteria. I use it when I’ve scratched too hard on an area using my nails. I basically use it to prevent any infection if I’m worried about it, though it’s also (sort of) helpful for drying up ooze. Because it stings a tiny bit, it occasionally helps stop an itch in its tracks (like the mild kind of tickly itch). I use #2 for anything else. I mostly use it on my neck because it is non-drying but not truly moisturizing. It just kind of help calms it down when its itching and gives it enough moisture so the dryness of my neck doesn’t cause further itching. I guess it’s hard to explain, but it feels great on and is really soothing.

Zinc oxide cream. Essentially this is diaper rash cream, but I use this one here. It’s basically like vaseline with zinc oxide in it, which you could very easily just make on your own by buying some zinc powder! The zinc helps dry up ooze, so sometimes I use this several times a day. Badger also makes a diaper rash cream (here) that has calendula and beeswax in it along with the zinc oxide and it is really nice on the skin. I found it at Whole Foods but I don’t love the price tag so I don’t use it often.

Showers. Baths kind of gross me out but literally almost every TSW sufferer loves them. I prefer a daily shower, though I will be honest, I have a love/hate relationship with showers right now. I feel SO GOOD when I’m in, but once I’m out my skin (particularly my back and sides and neck) just become so itchy and irritated. I’ve tried hot, cold, tepid, warm, blah blah you name it any type of shower variation there possibly is, but at this moment the most comfortable thing for me to do is this: I take a hot shower (not scalding hot, but very, very warm) and I try to keep it short, and the last 2 minutes or so I spend gradually decreasing the heat (by 25%, 50%, 75%, then 0 so I am just standing in ice cold water). This is what feels best. The hot water really feels good and feels like it cleans off some of the dead skin (totally could be a placebo effect but it does feel great), and then the cold is soothing and calms the skin down and seals in moisture before I get out. My showers generally are not more than 10 minutes. For soap I use Apply Valley Natural Soap. I use the Calendula Castile bar for body + neck and the Simply Shea shampoo bar which I follow with either an apple cider vinegar rinse or VMV Hypoallergenics conditioner. I would be lying if I said these soaps don’t sting my hands (when they are raw) but the truth is, everything stings my hands. I even tried Dove sensitive soap and that still stung, so I’d rather sting knowing I am using an all natural, gentle nourishing soap with ingredients I can read. I don’t use anything on my face, it just can not handle anything at the moment, though nor do I think it really needs anything right now since I am not wearing makeup. Sometimes I don’t use any soap if my skin feels too irritated, I just relax in the water which makes me feel clean anyway.

Tea tree oil. Lately I’ve been seeing tiny pimples on some of my fingers and wrist… it is the strangest thing. I use a Q tip with a dab of tea tree oil to help shrink them, which I apply after a shower and before moisturizer, once it dries a bit. Tea tree oil is also hailed for keeping infection away.

Tight clothing. After exiting the shower and toweling off, I immediately put on a tight cotton shirt. Many people have said how tight clothing helps them feel less itchy, and I am definitely in that group. I also use scarves to cover my neck only if I am going out in public so people don’t stare at me as if I have the plague. But really, its just about being as comfortable as possible and wearing whatever works for you!

Medication & supplements. I really try to stay as close to nature as possible in all things, so generally I dislike taking any medication unless it is necessary. Same goes for me in TSW. That being said, on the nights where I can’t stand the itching, I will take some Benedryl (only the dye-free kind) and I also have a prescription for Atarax, but it only sometimes helps. I do partake in the supplement department, however. I take a food-based vegan multivitamin (by Rainbow Light), 2-3g of Vital Choice fish oil daily(this is the BEST fish oil out there- it is certified unrefined, virgin, natural, and pure), and probiotics (the refrigerated kind).

Tea. I have always been a lover of tea. I don’t think there’s a kind out there that I tried and didn’t like! I drink chamomile and sleepytime tea for relaxing, even in the morning when my skin “wakes up” and feels like it might flare. I also drink licorice root tea now and then, as licorice contains glycyrrhetinic acid, which has been found to increase cortisol levels by prolonging its half-life, thus preventing the breakdown of cortisol. I sometimes drink this at night when cortisol levels are known to be lower.

Nutrition. I generally follow a very healthful, whole food, close to nature diet of minimally processed foods regardless of TSW. I’m not saying I’m perfect, yes I do eat cereal, but I buy natural foods without heaps of preservatives and other crap. I avoid gluten and dairy, largely because I don’t really enjoy those foods anyway, but also because of the effects they can have on skin. That being said, I have had a piece of bread and some cheese here and there when I am out and I do not notice a difference in my skin. I make a green smoothie every other day and drink green juice on the other days. However, with my appetite being off, sometimes its just about getting the calories in and not caring in what form. Sometimes a bowl of pasta, or some waffles with almond butter, or a chocolate cookie (all gluten free, of course) are what I’m craving, so I go for it. I don’t really care all that much because this is a time for healing, and you need nutrition to do so.

Miscellaneous

Some other random things that help me are gently rubbing an itchy area instead of scratching, or having someone rub my back to sooth it.

Sunlight is also excellent and does wonders for boosting my mood as well.

Calming activities overall are helpful because I itch when I become stressed. Walking, blogging, staying in touch with family and friends, and reading are all great for me both physically and emotionally. I like to go to a local park (if I feel up to it and am not itchy) just to relax in the sun with a good book (though I do jump back and forth between sun and shade to stay comfortable, haha)

I also cover up my bathroom mirror because I am a picker, and when I look in the mirror I immediately see skin flakes that I want to pick off! But this always ends in an itchy fit and damage, so I’ve got to prevent it somehow.

I sleep with a silk pillowcase on my pillow which is nice for if my face oozes I don’t adhere to it in my sleep! Yay. I prop my head up on 3 pillows to prevent facial swelling/edema and to keep my neck from folding in on itself which creates and hot itchy war zone on my neck…. needless to say, attractive.

As far as makeup goes, I am putting absolutely nothing on my face at the moment because thats what feels good… just leaving it bare. On special occasions (like my birthday a few weeks ago) if I can tolerate some, I typically will use a bit of Tarte or Cover FX concealer on any super-red areas, fill in my missing eyebrows with brow powder (can’t wait for those to grow back!), and a swipe of mascara and call it a day. Maybe some shea butter or Aquaphor on the lips so they shine. But that would be enough for me, for the time being anyway.

And there you have it. My list of what keeps me going, for now. Things like this were so helpful for me in the beginning, and I couldn’t read enough about it, because I was so lost with how to help my own body. So I hope this is helpful for someone else and please, feel free to ask me any questions 🙂